By Jackie Pool, QCS, Dementia Care Champion (www.qcs.co.uk)
What do we mean by meaningful engagement and why does it matter in dementia care? As an Occupational Therapist specialising in dementia and the founder of the PAL Instrument, a tool that helps carers to assess the cognitive and functional ability of people, these are two questions that I have been exploring and trying to make sense of for the best part of three decades.
On the surface, as defined by the Canadian Alzheimer’s Society, “meaningful engagement is a person-centred approach that encourages and invites people living with dementia to participate in an organisation’s work with purpose and interest”.
However, there is much more to it than that. The real question is how do get to that place? The answer is by knowing the abilities and difficulties of the person living with dementia and their life history.
Gaining the necessary insight in important in order to form a complete picture, as often the person with dementia cannot provide all of the information themselves. Therefore, often to piece together a person’s life history, carers need to also speak to friends and family, which can take time. But, it is an extremely worthwhile exercise as this is the only way to truly discover an individual’s character, personality and their background experiences, which is the key to shedding light on some of their behaviours and ultimately to meet their needs.
So, what is a meaningful activity? I would define it as an activity that not only deeply resonates with the individual, but also supports a person to experience a sense of what I call “socially meaningful being”.
The activity, therefore, must be significant, worthwhile, relevant, purposeful, important, valid and consequential. It is likely to be an interest that the person has enjoyed and chosen to do in the past, and has therefore remained significant to them. But, it can also be a personal care activity or a work-related or domestic activity. It must be relevant too. So, for example, an individual might view a bath as a purposeful, important and worthwhile activity. But, the timing also matters. If a person living with dementia has always been accustomed to taking a bath in the evening, the activity would completely lose its relevance if their carer scheduled it during the day. Therefore, perhaps this demonstrates that those responsible for building a biography of a person with dementia need to capture the smallest, most nuanced of details if they are to truly understand the person they are caring for.
Key questions to ask
To reinforce this point, when facilitating an activity, I always advise that carers ask themselves and their colleagues two questions. The first is, ‘is the activity meaningful to the person in terms of their life experiences and their wishes’? The second is, “is it also meaningful to the person in that it helps them to retain their sense of self?’
I mention these questions, as when I have worked in care homes or been a visitor, I have seen well-meaning providers taking newspapers or magazines away from service users with dementia because they think they are no longer meaningful to them because they cannot read it, or understand the content. But, if an individual has always gained enjoyment from reading a newspaper, so much so that it has become a focal part of their daily routine and lifestyle, then the onus is on care staff to enable the person to continue that routine, providing the setting, perhaps seated at a table with a coffee, so that the person can continue to engage in an activity that is meaningful to their sense of self. The newspaper or magazine is an important part of that setting even though the focus might have shifted to the drink or maybe to engagement with a care team member during this familiar everyday episode.
The newspaper in this example has great power. It provides a ladder that can help a person with dementia to re-find lost memories and most importantly retain their sense of self. So, the daily newspaper is a good example of what we call “material citizenship”. Material citizenship can be any object that a person uses or appreciates on a daily basis. It could be a favourite mug, hair brush or handbag. Like the newspaper, it must however support a person’s participation in daily life.
If material citizenship is taken into account when planning activities, it helps promote meaningful interaction, which I believe is the very essence of great dementia care. In order to achieve meaningful interaction, carers must take into account the fact that “a sense of personhood is bestowed by others”. What do I mean by this? Well, in order to connect with another person, usually the level of engagement on both sides is around 50 percent, However, it might be that a person living with dementia has lost some functional and cognitive ability and they are only able to interact and engage in a reduced fashion. Therefore, the onus is on the carer to fill the interaction gap by increasing their level of engagement. That requires good knowledge, good communication skills and most crucially, a willingness to engage and a clear understanding of what great engagement looks like.
Great engagement – what does it look like?
A well planned and well-crafted activity must be one in which a person with dementia is completely immersed in. It must be one where they feel a sense of joy, mastery and accomplishment in what they are doing. In short, it must remain a process driven activity rather than a product driven task.
But, to achieve all this, the activity also needs to be just right for the person participating. And this is where the PAL Instrument, which was recently acquired by Quality Compliance Systems, the leading provider of content, guidance and standards for the social care sector, can add great value. Many of you will already be familiar with the PAL Instrument, a tool I created over three decades ago, to assess cognitive and functional ability in people with dementia and other forms of cognitive difficulty. But, for those who have never come across the PAL Instrument, when carers complete the assessment form, it automatically produces a guide that helps them to support people at that ‘just right’ level.
QCS PAL Instrument Engagement Measure
The new QCS PAL Instrument Engagement Measure also enables carers to evidence meaningful engagement. The Engagement Measure, which I developed with QCS and has also been validated by Brunel University London, is part of a larger body of resources, which can be found in the QCS Dementia Centre.
It’s important to note that the QCS PAL Engagement Measure not only measures and evidences cognitive ability during a specific activity, it does so while evaluating the whole person. In spreadsheet format, it asks carers and/or activity providers to observe a range of different behaviours and applying zero, one or two depending on how often a particular behaviour is witnessed. Over a number of weeks, the QCS PAL Engagement Measure provides a snapshot of cognitive, physical, social and emotional behaviour. In the same way, the Measure can also be used by managers as a supervision and monitoring tool showing the great work that frontline staff do to support people over a set period of time.
Evidence shows that more meaningful engagement help people live for longer and also removes doubt, fears and guilt that families and friends might harbour when they make the difficult decision to place their loved ones care in the hands of others. There are also benefits for carers. Activities that are meaningful and meaningful engagement with people who they support also makes a difference to their lives and finally care services benefit too. More meaningful engagement boosts reputation, improves ratings and enhances recruitment and retention.
Over to you, then…